Friday, November 30, 2007


Elijah is Sick Again. Sick again! I know, I can't believe it either. The snot and boogers have returned with a vengeance, along with a bit of a fever, a deeper cough and a surly disposition. I have a feeling we have a mucus-filled, sleepless weekend ahead.

I was able to get a bit of a smile out of him for a pic tonight. I thought his mohawk hair looked cute so tried to get a few good ones with him and Daddy.

It is very tempting to let ourselves get down about this reincarnated sickness, as we were JUST getting over stage 2 and have pretty much been dealing with this for seven consecutive weeks now. But, I keep telling myself, it could be worse. Much worse. We'll take seven weeks of having a cold over many other things. We'll see if I'm this positive at 3 a.m.

Monday, November 26, 2007

9-mo. appointment

We took Elijah to his 9-month check-up today and everything looked great. His sats ran right around 82-84%, he weighed 19 lb. 3 oz. and his lungs sounded perfect. Dr. Judy said he looked amazing. We don't have to take him back till his one-year check, so assuming everything will go as planned and that no more sickness is in his near future, we won't need to see a doctor again until February! This would be wonderful.

Elijah started doing something yesterday that I have been giddy about all day. It seems like such a small thing, but with as little progress as he has made in some areas and after being told how "far behind" he is by the Early Childhood Intervention team, the fact that he can now wave bye-bye puts tears in my eyes! He started doing it last night and has been doing it non-stop since...of course, except for those 10 minutes I tried to get it on video tonight. I did get this new funny noise on video, though....

Dan was going to get in the pool with Elijah for swimming lessons tonight but just as we had gotten to the pool area, everyone was getting out of the pool because there were little bits of poop floating around in it. We were bummed, but I'd rather have to go back home than have Elijah swim with poop.

One last thing and then I'm heading to bed. A fellow heart baby, Madeline, is in serious need of prayer right now. She has been in the hospital for 4+ months literally fighting for her life. Just recently, she improved to the point where they had set her discharge date for tomorrow (Tuesday). She was doing great and was ready to go home. Sunday there was another unexpected setback and now no one is sure what is in store. If you'd like to visit their website, I have her link listed on the right. If anyone in the world needs your prayers right now, it is Madeline. This little girl has endured more than anyone should ever have to.

Friday, November 23, 2007

Elijah's story

In July of 2006, six weeks after our wedding and while on our honeymoon in the Bahamas, Dan and I found out that I was pregnant. We had a few days of excitement before the worry began. From the very beginning, the pregnancy was a difficult one. We had reason to think we had lost the baby a few different times. I had a constant feeling that something just wasn't quite right.

At my 20-week ultrasound, my fears were confirmed. Something was wrong with the baby's heart. The information that the doctor initially gave us wasn't entirely accurate, which led to a lot of uncertainty and emotional turmoil. The fear of the unknown, we learned, can be crippling. I had to get an amniocentesis procedure a couple different times and I had a few more ultrasounds before we learned the details about our baby’s problems. The time between learning something was wrong and finding out exactly what was wrong was a difficult time. Once we had some sort of idea about what to expect and prepare for, we felt significantly better about the situation and we felt ready to tackle it.

When I reached my 29th week of pregnancy, the contractions that I'd been having since week 25 became more frequent. I spent a few days in the hospital to monitor them and to attempt to slow them down. I tested positive for fetal fiber-nectin, which meant I had a very good chance of going into labor sometime within the following two to three weeks. By the grace of God, my body held out for another seven weeks.

I spent those seven weeks on strict bedrest and didn't lift a finger besides to shower, use the restroom and attend doctor's appointments. Dan was wonderful during that time. He did everything for me so I could rest and so that the baby would keep growing in my belly.

On February 19th, at 36 weeks pregnant, I had a particularly difficult doctor's visit. I came home feeling more overwhelmed, sad, frustrated and scared than ever. I was tired of the constant bad news that every doctor’s visit brought. The baby wasn't growing as much as he should have been, so there was continual worry about his small size and why he wasn’t growing much and whether or not he'd continue to thrive or even survive at all. I completely broke down. The stress had caught up to me. I laid in bed and cried. I had a chat with God that night. I asked him to finish this chapter, no matter what that meant. Six hours later, at 2:00 in the morning, my water broke. It was time. My prayer had been answered.

Labor progressed quickly (you can read the full birth story here). I was in labor for seven hours. We attempted to deliver the baby but his heart rate kept dropping into a scary range, so the decision was made to do an emergency c-section. At 9:55 a.m. on February 20th, 2007, Elijah Daniel Porta was born! He was beautiful and perfect. He weighed 4 lbs. 14 oz. and was 18 inches long. Even though he was four weeks early, he didn't have a single prematurity-related complication. Thank you, God. His heart diagnosis was tetralogy of fallot with pulmonary atresia and MAPCAs. He had a few other anomalies that were found at birth: his right kidney had failed to develop so he had only one functioning kidney, his urethra didn't fully develop (hypospadias), and he had a sacral dimple. All genetic testing came back normal, so these anomalies were not related to a genetic disorder.

He has functioned just fine with his solitary kidney, and we don't foresee it causing any problems in the future. His hypospadias was surgically repaired in August of 2008. An ultrasound was done of his sacral dimple at birth, which revealed (incorrect) good results. At 28 months old and still not close to walking, we decided to look into it further. An MRI revealed that Elijah had a tethered spinal cord. He had the surgery to release the tether on June 18, 2009, and six months later, at almost three years old, Elijah started walking.

We had initially thought that an open heart surgery would need to be done within a week of Elijah's birth, but along with the MAPCAs portion of the diagnosis came extra collateral arteries that helped blood get where it needed to be, so immediate surgery was not necessary. We were told he would need two to three heart surgeries within the first few years of his life, the first being somewhere around six months of age.

Elijah was in the NICU for three weeks after birth, gaining enough strength to eat on his own. His heart condition made his little body work extra hard, so he tired very easily. We brought him home with a feeding tube, but pulled it out after just a few days because he started chugging down milk on his own.

He grew quickly and never had a problem eating once we got him home from the hospital. All of his doctors were amazed at his progress, considering the extra work his body was doing. At two months old, he had his second heart cath because his oxygen saturations were low (in the 60s). The cath revealed that surgery would need to be sooner than anticipated.

Three weeks later, on May 25th, 2007, Elijah had his first open heart surgery at three months old. Dr. Moga, his surgeon, placed a temporary conduit (shunt) that acted as his pulmonary valve into his heart and he also redirected some of his collaterals that were supplying duplicate bloodflow to his lungs.

Elijah unexpectedly thrived after his first surgery. His weight gain continued to surprise all of his doctors. He started out not being on the charts because he was so teeny and it didn't take him long to get to the 50th percentile for both height and weight. This is not typical for a lot of heart babies, and was a huge blessing.

Initially Dr. Gremmels, Elijah's cardiologist, told us that his second open heart surgery (the "total repair") probably wouldn't need to happen until fall 2008, but with as fast as our boy grows everything comes sooner than expected. In February-March 2008 Elijah's oxygen saturations began dropping quickly and a heart cath revealed that surgery would need to happen soon.

The weeks leading up to his second surgery were tough. His health declined rapidly. His oxygen sats ran between 40% and 65%. He had blue lips and purple fingernails. He got sick often and his body was not able to fight anything off. He had a few scary blue spells because his body had little tolerance for anything out of the norm, such as taking a bath. He threw up often and had scary, high fevers. His body was READY to have a fixed heart!

On April 15th, 2008, Dr. Moga completed Elijah's total repair. He was able to do everything he set out to do. He replaced the conduit with a bovine valve, fixed the VSD (hole) and placed a stent in his right pulmonary artery. The surgery went flawlessly and the recovery had no unexpected bumps. We were told to expect a two-week stay in the hospital but we were home in eight days! He is a rock star!

Three years later, in February of 2011, another cath revealed that Elijah's valve needed to be replaced. Somehow this came as a surprise to us, and I was sent into a tailspin. The year following that news was the darkest of my life to date. Thankfully, God took care of us and I was able to accomplish the most important task during that time--taking care of our precious boys! Our little Sammy was now a part of our lives and was nearing his first birthday.

When I think back on that time, I picture myself shriveled up and in tears and I picture Elijah as happy and smiley as he always is. The stress did not affect him negatively, and I am constantly thankful for that. He absolutely kicked that third surgery's butt, which occurred on June 10, 2011. Dr. Moga replaced Elijah's very tired and enlarged valve (we saw was very distorted and enlarged). He now has a cadaver valve since that turned out to be the best fit for his anatomy at the time.

Elijah was extubated the day of surgery and he experienced no post-intubation croup or complications, which was a miracle considering his history with croup (which began around age three, especially after being intubated). Everything about that recovery was smooth and miraculous. God took care of us. Our strong four-year-old came home after five days in the hospital! Seven days after being operated on, he was running around the zoo (gently). It was incredible.

He will need at least one more open heart surgery to replace his current valve, which he will eventually outgrow. The cath he had in April of 2013 showed no issues with pressures or function, so we are praying for a few more years without a heart surgery before it needs to happen again. Heart caths are the exception, as he has had and will need these yearly(ish) until he is done growing.

In the fall of 2012, we discovered that Elijah could not hear out of his left ear. Upon investigation, we found that he had yet another congenital anomaly that did not present itself until he was nearly six years old. The anomaly itself is extremely rare, but the fact that it didn't present itself until he was five was typical. A mass of tissue called a cholesteatoma had grown near and was pressing up against his eardrum, causing loss of hearing. The mass had grown so large that it had literally dissolved almost 100% of the bones inside of his ear. The surgeon removed the mass, but was unable to do reconstruction since the bones were absent. In October of 2013, Elijah will have a prosthetic device placed to hopefully restore hearing in that ear.

Academically, Elijah is on par with (if not slightly ahead of) his peers. He began reading at age four-and-a-half and his intelligence shines every day (i.e., he constantly outsmarts us). In almost every other area of development, he is delayed. Gross and fine motor skills continue to provide the biggest challenges for him. Climbing stairs are difficult and he prefers to have his feet firmly planted on the ground at all times, unless he is in a swimming pool (his favorite). He has a difficult time with buttons and zippers and anything requiring finger/hand strength. He is followed by special education services through his school for speech and physical therapy and he also receives outside services for occupational and physical therapies. His speech has come a long way, but he still has difficulty pronouncing a handful of sounds regularly (TH and L). With all of that said, he has come so far. He has overcome some major obstacles in a short period of time. We are so very proud of him.

Elijah had an incredible kindergarten experience and he had the most special, caring team looking out for him. We feel blessed beyond words about the people God has put into his life, medically and now with his educational and developmental experiences, as well. We are looking forward to this new chapter called first grade!

We have dealt with behavioral issues off and on with Elijah since his last open heart surgery in June of 2011. He seems to need more sleep than his peers, so we do our best to ensure that happens. A rested Elijah is a happy, cooperative Elijah. A tired Elijah can be challenging. No matter what, we love this boy (and his sweet little bro, of course!) to pieces and I am constantly having to pinch myself because I cannot believe the obstacles he has overcome. And all with a big smile on his face. He is such a friendly, special little person and everyone who meets him falls totally in love with him.

We are blessed and grateful! We continue to walk out this path with our oldest boy and support him in any way that he needs. (It goes without saying that we feel the exact same about our incredible little Sammy, as well!)

To be continued! We never know what's next, but we know God has us cradled in His arms!

CHD Resources

Congenital Heart Disease Resources
Children's Heart Clinic (our wonderful doctors, Dr. Gremmels and Dr. Moga)
Children’s Heart Foundation
Congenital Heart Defects
Congenital Heart Information Network
It's My Heart
Kids With Heart
Little Hearts
Mended Little Hearts
Parents for Heart of Minnesota
Saving Little Hearts
Saving Little Hearts, the blog

TOF/PA/VSD/MAPCAs Information
Tetralogy of Fallot
Another Tetralogy description
Visual depiction of Tetralogy of Fallot
Pulmonary Atresia
Visual depiction of Pulmonary Atresia/VSD/MAPCAs

Before Elijah was born, when things were very scary and uncertain, and during and after his open heart surgery, I found it extremely helpful to talk to other parents who have experienced something similar. If you've found this page in search of information or support, please feel free to contact us any time. Many people have helped us to get through this first part of our journey, so we would love to do the same for others.

Samson's Story

Samson’s birth story (written at 4 weeks old)

Well, Samson, you surprised us all. Nobody thought you would stay in my belly for as long as you did. I prayed so hard for a 39-week delivery and that is exactly what God gave us! I was on bed rest for over four months with pre-term contractions. Because I went into labor so early with your brother, my doctor was extra cautious and wanted me to stick as close to the couch as possible. Bed rest seemed to last forever, but I kept thinking about meeting you and that made it all worth it.

The day before my scheduled c-section, my contractions started getting regular. They came about seven minutes apart for a good chunk of time and I wondered if we might have to do an emergency c-section after all. We got through the night without any drama, though, and woke up super early to get to the hospital for surgery. I don’t know about Daddy, but I didn’t get much sleep that night. I was so excited to meet you! I was also a little bit nervous about the surgery and I was anticipating missing Elijah, too. We had brought him to Grandma and Grandpa’s house the night before and I knew I wouldn’t be seeing much of him in the following days.

We got to the hospital and checked in. I was brought back to a room where I was prepped for surgery. The nurses had a hard time getting an IV started in my arms (what's new), so they ended up having to put one in my hand. It hurt at first, but I soon had other things to distract me. Pretty soon there were a handful of people in the room and I was being ushered into the operating room. This is the moment when I got really scared. Daddy wasn’t able to come back with me right away and I didn’t like that very much.

The operating room was small and I remember being surprised by that. A nurse had me sit down on the operating table and lean into her while an anesthesiologist put the spinal block into my back. I felt my heart rate increase and I was on the verge of panicking. I wanted Daddy in there with me! Everything went fine with the spinal block and they had me quickly lie down on the table. Lots of people buzzed around me, getting everything prepared for surgery. I kept asking, “When can my husband come in??”

The main anesthesiologist made the comment that it was a good day to have a baby. He was a “numbers” guy and 6 + 4 = 10, which is what the date was: 6-4-10. I told him I was a “numbers” gal myself, and that 11 was my "lucky" number. 6 + 4 + 1 + 0 = 11! Elijah’s birthday actually worked out the same way: 2 + 2 + 0 + 0 + 7 (2-20-07) = 11. Anyway, that distracted me until Daddy was able to come into the room. Things started feeling really strange with my body at about this time. It felt like I couldn’t breathe because part of my lungs were numb. That made me start to panic again, but I quickly calmed down.

Everything started to go really quickly. I felt a lot of tugging and pulling and pushing and then suddenly Daddy was told to get the camera ready to take your first photo! Then, WAILING! You screamed your little lungs out! I heard someone comment on how big you looked and another person comment on your head size. The doctor let you peek over the curtain at me and then you were taken to be cleaned off and weighed. That is when my tears started to flow! Happy happy tears! I couldn’t stop them. The nurses kept making sure they were happy tears and I kept nodding yes. We waited so long to meet you and it was so special to be able to partake in your birth. Hearing your healthy cries gave me the most amazing, happy feeling!

I got to hold you for a minute once you were cleaned and wrapped in a blanket. I remember noticing your extremely long thumb nail and then immediately taking in your beautiful face. At first I thought you looked nothing like Elijah, but later I realized that you do in fact look a lot like your big brother.

I felt a weird pain in my chest as I was being closed up (which was apparently normal), but other than that things went fine and really quickly. As soon as they were done, the phone in the OR rang and we found out that you weighed seven pounds even! Way more than I thought you would weigh!

I was wheeled into a recovery room, where you and Daddy came to see me. It was surreal and very very weird to see him holding you without any machines or wires attached. We got pretty used to that sort of thing after Elijah was born, so in my mind wires accompany every newborn. I felt so grateful that you were so healthy. It really was quite a strange feeling.

We stayed in the hospital with you for three days. Or I should say, you stayed in the hospital with ME for three days. I had to recover from my c-section, and you and Daddy hung out in my room with me while I did that. There are a few things about the hospital stay that are really special to me and that I never want to forget about..

I loved the moments when I was able to nurse you. I wasn’t able to nurse you for very long because of a lot of pain (emotional and physical), so I cherish the moments we had doing that together. There were times when you would start to cry (you were constantly hungry, even right from the start!) and I would nurse you for a bit and you would calm down and fall asleep next to me. Daddy thought I was crazy, but I wanted you with me all the time, even during the night, because I was so in love with you. I was always sad when you were across the room in your bassinet.
We always had you wrapped up in your cozy little Halo sleepsack and you looked so tiny and cute when you slept in it. You really were a great sleeper from the start. Elijah has always been a good sleeper, so we were very happy to see that you were, as well.

I will never forget your funny little high-pitched squeal that you made when you were hungry. You didn’t do it for very long, so it’s something I want to tuck in my mind so I always remember it. It was cute and it made me laugh every time.
I sat and stared at your perfection for hours as I sat in that hospital room. I touched your super soft skin (you can ask Elijah about this...soft necks are my favorite) and kissed your forehead and rubbed your back. I couldn't get over how perfect you were!

I loved, and still love, the cute little noises you made when you ate and slept. You are absolutely precious, Samson, and a miraculous gift from God! We love you so much and we are so thankful you are a part of our family. It feels like things are complete with you here.

You are now four weeks old and we are getting to know you more every day. You love your food more than anything in the world and you seldom let a feeding go by without screaming your head off so the whole world can hear. When you are rested and when your tummy is full, you love to look around the room with your curious eyes.
I am so excited to continue to get to know you and I am so grateful to be your mommy! Thank you for choosing us, Sam. We love you!!

Thursday, November 22, 2007

Day of Thanks

Elijah turned nine months old this week. That means that nine months ago we heard his deep, growly roar and saw that precious face of his for the first time. We have endured quite the range of emotions since then and still have a lot of ups and downs ahead of us, yet somehow we feel more grateful than ever. Life is suddenly much more precious and sweet.

Since it's Thanksgiving I've been thinking about the many things we are thankful for this year and it gives me the most genuine feeling of gratitude. I'm thankful for Elijah staying in my belly for as long as he did, for Dr. Gremmels being put in our path, for Elijah's fast-growing chubby thighs and good temperament, for an excellent and understanding employer, for our families who supported us wholeheartedly through the lowest points of the year, for my wonderful husband, for our strengthened faith, for all of the amazing new people we've met, for living close to an excellent hospital, for the incredible things steady surgeon hands can do to teeny tiny hearts, for time with friends, for strengthened relationships...

Happy Thanksgiving! If you read this blog, that means you care about Elijah and that means everything to us. Thanks so much for keeping up on our little boy.

Tuesday, November 20, 2007

Little fishy

Elijah was so cute at swimming lessons last night! He was much more comfortable in the water than he was last week. He splashed Mommy a lot and practiced floating and kicking and chasing rubber duckies around the pool. I didn't realize that it is instinctive for babies to hold their breath when dunked (I didn't learn this till today), so I was worried I was going to drown my baby by putting him under water! Now I know...we'll try it next week.

Here are some cute pics. Don't mind the scary lady. I don't know who she is.

It has been almost six weeks since Elijah first got sick and he still has a cough! I can't believe it. His congestion is getting better, and his night sleeping is improving a little bit every day. He is basically sleeping through the night now. He wakes up a few times and cries just for a bit, but usually goes right back to sleep. He has started rolling around a lot more lately, so he's been running into the side of his crib in his sleep and he's not used to that. Hopefully once he is strong enough to re-situate himself a little better he won't wake himself so abruptly. We'll hear bang.....pause.....wwaaaahhhhhhh...... and we'll go in to find his head wedged in the corner, his body twisted all over the place and an arm sticking through one of the slats.

Friday, November 16, 2007

Good cardiology visit

Elijah's cardiology check-up with Dr. Gremmels went great. His oxygen sats were at 82%, which is perfect for him at the present time. Dr. G is having us decrease his Lasix dosage from twice/day to once/day. In two weeks if he shows no signs of congestive heart failure, we are to stop the medication completely. If this goes as planned, it will be the first time that he's ever been medication-free! Elijah's next open-heart surgery will occur when his oxygen sats creep down to the 60% mark. His lowering sats will be our way of knowing that he is outgrowing the shunt that is currently acting as his pulmonary valve. Basically, the faster he grows, the sooner surgery will be. He has historically been a pretty fast grower, so this surgery may come sooner than we anticipated. This will be the Big One.

Elijah also has a surgery coming up this winter to fix his hypospadias, another defect he was born with where his urethra did not fully develop. This surgery will involve redirecting the urethra and reconstructing its surrounding tissue. We're hoping to get this out of the way before it's time for the Big One.

Oh and the most exciting part about today's visit? Unless something unforeseen happens, we don't have to take Elijah back for a cardiology visit for THREE WHOLE MONTHS!

p.s. Pepino bailarin....dancing cucumber!....pepino bailarin...dancing cucumber!...pepino bailarin....baila, baila, ya!
Sorry, too much Veggie Tales!

Developmental report

We got the report back from the Early Childhood Intervention team, and as expected, Elijah has some significant delays. He scored the lowest possible score for gross motor, which didn't surprise us at all, and his gross motor delays seem to be affecting other areas. If he can't get around to explore, he's not going to be as stimulated cognitively, so that's what is happening. His cognitive scores were pretty low as well. His fine motor and adaptive skills were great and his language and social skills were good. Here's the funny part...he scored the highest possible score on LEISURE. That's our boy! Dan and I got a pretty good laugh out of that. Starting on December 3rd, we'll have therapists coming to our house weekly to help him to improve in the areas needed. Our first thing to focus on will be gross motor. We actually have been focusing on gross skills all along, so it's a little frustrating that we aren't seeming to get anywhere. Hopefully these new people can really help us out.

I should also point out that they did NOT take his prematurity into account when coming up with these percentiles, so he's a little better off than they report him to be. Also, there are things that he is able to do that are listed on the report as him not being able to do, so this report is not entirely accurate. I have to share these two lines from the report: "Elijah did not demonstrate rolling to his stomach and cried when assisted into this position," and "Elijah played with his toys contentedly and jabbered during much of the observation." That's Elijah in a nutshell.

He went through the night without eating again! He did need a few back rubs because his plugged, boogery nose woke him up a few times, but those episodes are getting less frequent. I don't want to jinx anything here, but I believe we are soon going to have a sleep-through-the-nighter!!

Dan is taking Eli to his cardiology check today. We'll post later with the details of that. Our sweet skydiving friends Tammy and Doug offered to come down and watch Elijah for an evening on Saturday so we can get out for a few hours and have some adult time. We're very excited for that. Tammy and Doug are so nice to do this. They live pretty far away, so it will be quite a drive to get here and back. Thank you, guys!

Wednesday, November 14, 2007

Boogers galore

Elijah and I started swimming lessons this week! We'll be going every Monday night for the next 7 weeks. I forgot our camera, but next week I'll have Dan take some pics of our chubby boy splashing crazily in the pool. It took him a minute or two to get used to the water temperature, but after that he seemed to love it. Babies are such natural swimmers. I was surprised to see him try to kick his legs right away.

Last night Elijah threw up for the first time in 10 days. There was baby puke every crevice of his body, every crevice of Dan's body, every crevice of the couch.. We are hoping this happened because another tooth is coming in and not because he's sick again. The next few days will tell. He slept pretty well last night and seemed just fine this morning so he's at daycare today.

Once we can get rid of the boogers and snot that have taken over our son's body, I think Elijah is going to be ready to sleep through the night! The only thing that really seems to wake him in the night lately is his plugged nose. A few nights ago we did a trial run and didn't feed him when he woke up at 2am and he went right back to sleep. Yaayyy!! More sleep for all of us may be in sight!

E has a cardiology appt on Friday for a post-heart cath check-up. Tomorrow we have the Early Childhood Intervention people coming by to give us the final report from the developmental testing they did a few weeks ago. We'll find out exactly how far behind he is and in what areas and based on that information we will get therapists (physical, occupational and/or speech) to come to our home to help him progress more quickly. He still REFUSES to do tummy time. I'm beginning to think this kid will never crawl. He's not even close. His sitting is getting better every day, but still not quite there. I think he just decided he wants to be a baby forever and have Mom and Dad do everything for him. :)

Sunday, November 11, 2007

Feeling better

Elijah is finally starting to feel a bit better. After 4+ weeks of being sick, we're hoping that this is the end of it. He's sleeping better (thank God!) and he's generally much more content. He still has an abundance of boogers and snot stuck inside his body, but it seems to get a little better each day.

Here is a video clip from this morning. He was in a very good mood all day today. It was fun to be able to spend the day with him. His flailing arms are funny.

Here are some overdue Halloween pics. He wore his dragon costume for about 10 minutes before insisting that we take it off.

After his bath tonight

The awesome tie-dye shirt that Elijah is wearing is from our good friend Ellen, who does AWESOME work. Check out her online store when you get a chance. We really love her stuff.

Also in the pic is Eli's cool new blankie from fellow heart mama Samantha. It is the softest blanket I've ever felt and Elijah loves cuddling up with it. She also has a website if you'd like to check out her things.

Saturday, November 10, 2007


Elijah's report from the pulmonologist yesterday was very good. He has no lung issues besides just having a nasty viral infection. This is great news! We'll just continue with neb treatments for now. He said there's a chance of Eli having asthma, but it's way too early to speculate on that. Only time will tell.

He has been sleeping MUCH better today and last night. It's a significant improvement. He slept until 7:40 this morning!!! This is an Elijah record. He's normally such an early riser (!). This morning he took a 2+ hour nap and he's sleeping again right now. I'm going to take advantage and go get a nap myself!

Friday, November 9, 2007

Quick updates

Baby Isaac was in surgery for 13 hours yesterday, but is out and is now recovering. He was able to get his full repair, which is really great news! Thanks for all the prayers for him. Please continue to pray for a quick and complication-free recovery for this sweet baby.

Elijah is slowly getting better day by day. He still has a nasty cough and lots of congestion. Today Dan is taking him to see a pulmonologist to see if we can get some things figured out with his wheezing and gunkiness. I'll post later with details...

Tuesday, November 6, 2007

Baby Isaac

Ok everyone, I am asking you all to reeeeally pray hard for this little guy, Baby Isaac. He is having his second open heart surgery on Wednesday (7th) and it is looking like it is going to be a long and involved one (possibly 10-14 hours). His family has to be away from home to be with him and they of course are worried and scared. Please say some extra prayers for Isaac and his parents and brothers today and tomorrow. You can follow Isaac's blog here.

Sunday, November 4, 2007

The Beast and The NN

Elijah is an absolute Beast today. Really. I mean, I've never seen him like this before. Maybe it's 'Roid Rage? He's been doing the back arching thing and screaming and flopping around like a crazy fish all day long. I actually did not give him any more steroids after we left the hospital last night. Something is telling me it's just not right. We'll consult with E's pediatrician tomorrow and if she convinces us to go forward with them, then we will, but it just doesn't seem worth all of this extra stress. He doesn't sleep and he's a complete maniac. Thankfully Dan came home from his trip a bit early so he's been able to help out today and I've been able to nap. I was just a few seconds away from losing my sanity, so his arrival came just in time.

I have to share my least favorite episode from yesterday's ER visit. If YOU were a mean, cold person, would YOU become a nurse? Yeah, me either. Anyway, here's how it went down:

Nasty Nurse (NN): Bad news. I'm going to have to suction Elijah's nose to get a sample for an RSV test.
Mommy (M): Oh he's used to suctioning, we do it all the time. He'll be fine.

[M thinks this will be a "normal" suction, but it is far from normal. NN sticks a giant tube down Elijah's nasal passage (very harshly, I might add) and this makes E very mad. The kind of mad that M has never ever seen in E. His body flops crazily, the screams are ear-piercing, flailing arms are a blur of commotion. It is a bad scene. M can hardly keep E on the bed.]

NN: Almost done. Theeeeere, done.

[NN finishes the suction and E is still totally freaking out. He is not a happy baby. M tries to calm him, but he's flailing so much that M can't even pick him up. NN grabs a nebulizer mask and immediately puts it on E's face and starts a nebulizer treatment. M immediately takes the mask OFF and picks up her son.]

NN: What are you DOING? You're wasting medicine!
M: ARE YOU KIDDING ME? Do you see how upset he is? I'm going to calm my baby.
NN: But we're wasting medicine!

[M gets E calmed down a bit, but he's still not calm. M can tell another episode is about to take place in the very near future. NN puts the mask back on E and tells M how to position E so he won't be upset. Riiiiight, thanks for the tip. E returns to his flopping, screaming, freakish state, but NN presses on. She keeps her hand firmly on the mask this time so M doesn't try to abort the situation again and waste more medicine.]

NN: He needs to get ALL of the medicine!

[M is basically trying to make a fish out of water sit still and is praying that the stupid medicine is ALMOST DONE. Finally, it ends and M takes the mask off E and once again attempts to comfort crazy mad baby.]

NN: Wow, you can tell who's in control HERE, can't you?

[M wonders, could she really mean what I think she means? Does she think that because a mother wants to comfort her extremely upset baby that the baby is "in control" of the parent? It's not even worth it to respond to this. M does cartwheels when NN leaves the room. NN must tell the staff that she doesn't want anything to do with that controlling mother and her screaming child because E suddenly has a new nurse (who is a peach, by the way).]

Note: E never used to even notice he was getting neb treatments. Ever since our experience with NN yesterday, he won't have anything to do with the evil nebulizer. Thank you, Nasty Nurse. Thank you. Your coldness has scarred our son. Change professions, please. Go do something where you never need to interact with another breathing creature ever again.

Saturday, November 3, 2007

More infection

After enduring the most horrible ER experience I've ever been through, I want to crawl into a hole and die. We normally have great experiences at Children's, but today was AWFUL. I'm not going to relay everything that upset me or I will get too emotional and probably start crying again. What we found out was that Elijah was not overly dehydrated, thank God, he does not have RSV, thank God, but he does have another viral infection. Ug!! Already?! We just got done with the last one! They gave him a double dose of steroids today to help out his wheezing/strained lungs, which of course is going to make him not sleep well tonight. We're supposed to re-start Albuterol on the nebulizer every four hours and do two doses of steroids for 5 days and go from there. Hopefully this time we get rid of it. Nasty infections. least it isn't RSV. That's what I keep telling myself.

I am thanking God for my friend Jess right now. Without her today, I may have died. It was not a fun day and now I'm going to bed while Elijah is still asleep.

Sickness abounds

This weekend has been very unfun so far. By unfun I mean awful. Dan went on a hunting trip for the weekend, so sick Mama gets to care for sick Baby. I woke up Friday morning with a head cold, which has today turned into a fever and chills and chest congestion. Elijah has thrown up almost every bit of food I've given him in the past 24 hours and has had no wet diapers, so I'm afraid I may be taking him to Children's today to make sure he's not dehydrated. His cough has also gotten way worse in the past few days so I'd like to get that checked out, too. I just tried to feed him a bottle and he only drank 3 ounces!? Wha??? Really not like my hungry man. I'm a bit worried. We were up a lot during the night. Elijah's cough kept him up, so I was in his room trying to help him get back to sleep more than I was in my bed.

Thankfully my friend Jess is on her way over right now and she's going to watch Elijah for a few hours while I get some rest and then I think I might bring him to Children's after that.